Advocacy

Pulse on the Road in Colorado!

Laurie Kelley April 15, 2013

The Colorado Chapter of the National Hemophilia Foundation is flourishing under the leadership of Amy Board, executive director and her team. We had an excellent turnout for our Pulse on the Road insurance symposium yesterday, presented at the Colorado Chapter’s Educational Dayz! 2013.

Friday night started with a fun ice-breaker, dinner and then a great presentation in joint care by my friend Jeff Kallberg, a physical therapist who has hemophilia. This was followed by a carnival in the ballroom. There were lots of children and their families attending, so the whole event was kid-friendly, of course!

On Saturday, I was joined by Michelle Rice, policy director of NHF and Frank Quintieri of Baxter Healthcare to present Pulse on the Road. Frank gave an overview of the Affordable Care Act (ACA). In a quick review he stated that the ACA, passed in 2010:

Lifts lifetime & annual caps
Dependents stay on parents’ plan till age 26
Eliminates pre-existing condition exclusions
Creates “marketplaces”
Allows states to expand Medicaid eligibility

Frank explained each of these changes in detail, all of which was good news for people with chronic disorders. The audience had excellent questions in response to his talk, from how does the ACA affect the self-insured plans, to what happens when a child with hemophilia turns 26 and then doesn’t have insurance. We all agreed that this was one of our most inquisitive audiences to date!

I spoke after a break about the importance of choosing a healthcare plan: you need to know terms used by payers, where factor is charged on your plan (major medical or pharmacy?), and what are the costs versus the benefits of the plan? Beware of what is covered in–network versus out-of-network. And most of all, know when your open enrollment period is—the time when your employer chooses a new plan. We all had a great laugh when audience member Maryann called it open season; “Like deer hunting?” I replied.

Michelle Rice presented NHF’s excellent Insurance Toolkit, designed to walk you through a hypothetical patient who wants to compare two plans. It’s detailed, challenging and incredibly useful. If you can do this Toolkit, you are ready to compare plans under the ACA through the marketplaces. The audience dug right in and got to work, using the calculators we supplied. And right away people caught on that there was a trick question when it came to plugging factor costs in! Impressive!
In summary, we reiterated that:

Everyone must have health care coverage in 2014
You may need to select your coverage in a marketplace
You must read your insurance policy annually

Hats off to Amy and her team for an excellent weekend, and for being such gracious hosts for us. We’re excited to see Colorado flourishing!

No book review this time. Colorado patient Chris Bombardier, who summited Mt. Aconcagua in Argentina in February (first person with hemophilia ever to do this!) and girlfriend Jessica Carter kindly spent the day with me Sunday to take me hiking and caving. The original plan was to hike 14,000 ft Pike’s Peak but conditions were very bad—high winds and lots of snow. But we had a great day hiking the Gardens of the Gods, and later visiting the Cave of the Winds. Beautiful rock formations under ground, a mile of stunning beauty including stalactites, stalagmites, columns, cave popcorn, cave bacon and soda straws. Colorado has tremendous natural beauty: go see it if you can!

The Power of the Common Person: NHF’s Washington Days

Laurie Kelley March 3, 2013

Laurie Kelley with Debbi Adamkin, executive director of Florida chapter

Don’t be nervous!

Ellen Riker told the attentive audience of first-timers at NHF’s Washington
Days on Wednesday, February 27. I was thrilled to be among the first-timers.
And I took a lot of heat for that. For all I have traveled the world, and been
involved with our community for about 24 years, I have never attended
Washington Days! I’m usually in a developing country, as winter provides mild
temperatures overseas. But now, I’m hooked on Washington Days and can guarantee I’ll be back.

Washington Days originally began by HTCs in the 1970s, to
secure more funding. Many of their services were not billable to insurance,
like those for social services and physical therapy. Soon, National Hemophilia
Foundation (NHF) and the HTCs joined forces to help advocate for the HTC
comprehensive care model and in 1975, successfully secured funding. Now, groups of patients and families with hemophilia come from all states to meet with
their representative and senators to speak with one voice about securing funding and preserving care. This year? The largest turnout yet with over 340 people ready to lobby, from nine-year-old Peyton Brush of Texas, who has hemophilia, to, well, people in my age group!

The next speaker, Joanna Gray, told us “You’ll never be
alone when you lobby.” I originally thought we had to meet with our reps solo! But we would go as a regional or state group. “And meeting with the staff is more important than meeting with a senator.” I looked at my agenda and we would have seven meetings in seven hours on Capitol Hill!

The next speaker Wednesday night was Travis Albright, an
articulate young man from Michigan who serves as an aide for representative Gary Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell. I would prepare facts and figures when I would lobby, but the [hemophilia] camp stories I told made the biggest impression. Every representative in the House represents 600,000 people. You represent your community, which is small. You have awesome power to speak for everyone.”

And Michelle Rice, director of public policy at NHF, stunned
us by saying “We have 220 visits scheduled for tomorrow!”

I have met with Prime Ministers, Health Ministers and even many celebrities. No problem. But I have never once met with my representatives
or senators, and I was feeling nervous! All the speakers put me at ease, and it helped to know I was going with my local group, New England Hemophilia Association (NEHA), an experienced lobby group.

That night we gathered in the Marriott lobby bar to greet old friends, meet new ones, laugh and get ready for the big day.

Laurie Kelley with Jose de la Riva, chair of NHF, father of son with hemophilia

On Thursday the weather was sunny and brisk. You can do a lot of running around on Capitol Hill trying to meet with your representatives. We rehearsed how we would all present our two main concerns: Kevin Sorge, executive director of NEHA, would introduce us and outline why we were here: 1) To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable. As tier 4 drugs, the co-pays would be outrageously high, with patients required to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch

Then I would give a quick rundown on Hemophilia 101. Showing
my photos of children overseas with swollen joints or head bleeds really drove
home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would discuss HTCs, and share his own personal perspective on them. Diane Lima, mother of Jonathan and Andy, would share her experiences with insurance costs and the boys’ quality of life. She created very effective laminated cards on each boy that were teaching tools for the high cost of care. She left behind copies for each representative. Ian Muir, another person with hemophilia, also shared his personal story. Finally Kim DeAngelis, Ph.D., board member, summarized beautifully the main points and what we needed from the representative. It all went like clockwork!

We had excellent meetings. We noted that some of the representatives’
aides were more observant, some were extremely engaged, some chatted about their
own experiences in healthcare system, but all expressed an interest in supporting
our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships
for H.R. 460! I was deeply impressed by the mostly young aides: how
intelligent, poised and responsive they all were.

It was an intense and long day. Lunch in the Capitol was
hectic, crowded and noisy. Decorated generals huddled in talks next to chatty
tables of young people. Our feet were tired and eyesight blurry by the time we were done. We had a wonderful dinner, more speakers and then back to the bar to
complete evaluations and follow up items. Thank you emails or notes are vital.
I would be sending out copies of my book Raising a Child With Hemophilia to
each person we visited.

I cannot praise NHF enough for their fantastic organization
of this event. It went without a hitch, and everyone worked hard and yet had a
great time. I’m hooked. I’ll be back next year. And I’ll be watching the
political fallout of the budget deficit management much more carefully, now
that I’ve dipped my toe into the political waters of hemophilia reimbursement.

To see all the photos, go to http://lakelley.smugmug.com/Events/Washington-Days

Great job NHF!

POTR is Hot in San Antonio!

Laurie Kelley June 28, 2011

Insurance is still the hottest subject in bleeding disorders, and this past weekend in San Antonio really proved it. We had a great turn out for “Pulse on the Road,” our unique symposium, sponsored by Baxter Healthcare Corporation, that is completely devoted to educating patients about insurance reform. As guests of the Texas Central Hemophilia Association and Lone Star Chapter of NHF, we presented a three-hour symposium on Sunday, June 26, from 7 am to 10 am, to an audience of over 200 patients and their families.

The chapters did an excellent job of attracting patients and families to attend. With hundreds of family members and a fair amount of industry representatives, this was a stellar meeting. I loved seeing the children with hemophilia scampering about, or holding relay races in the hallways as part of the supervised kids’ programs. No joint problems anywhere!

While a nutritious, hot breakfast was served, I started the session Sunday morning with an overview of hemophilia’s history and how our unique history has been placed high on the radar screen of insurance companies and state governments. My talk was followed by Elizabeth Stoltz of Baxter Healthcare, who gave an Insurance 101 session; her talk covered common terms that all families will need to know to navigate healthcare reform. Then, Michelle Rice of NHF presented the results of a patient-focused survey from last fall, which tested to see how much bleeding disorder patients knew about their insurance and insurance reform. Results were encouraging, as high numbers knew that lifetime maximums were being eliminated and that dependents would be able to stay on their parents’ insurance until age 26.

Finally Jim Romano of Patient Services, Incorporated (PSI) gave the keynote about healthcare reform. Breaking down the many changes into digestible amounts, Jim covered how the new healthcare reform will help us, and what we need to monitor to ensure we continue to have access to the care we need.

To spice things up and keep our audience sharp at such an early hour, I asked the audience after each presenter a question, and whoever got the right answer won cash! The message: we are trying to educate to keep the cash in your wallets. If you don’t know much about your own insurance policy, you may overpay. If you don’t know how insurance reform will impact you, you may lose money. In these economic times, we want every family to preserve their hard-earned dollars. The “competition” added some fun to the topic of insurance and we had some sharp people in the audience!

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. Everyone agreed that 45 minutes for break out was not enough. These interactive and informal gatherings proved the highlight of the meeting. Patients were able to ask questions about their personal situation with experts in their field. Jim Passamano, of Sufian & Passamano LLP, a lawyer specializing in chronic disorder and insurance, helped explain Medicaid changes to many families. Shannon Brown, a social worker from Texas, spelled out certain out of pocket costs that patients will need to monitor closely. And Michelle Rice of NHF presented a new personal tool to help families get a handle on comparing insurance plans.

Simultaneous translation into Spanish helped the many Spanish-speaking families understand how healthcare reform may impact them.
Patients truly appreciated the three-hour program and the chance to speak to insurance experts in bleeding disorders. “I would like to have attended all the [break out] sessions and not just one!” commented one attendee. “I’m very pleased at how much I learned and all the wonderful people I met!” exclaimed another. When asked if they learned something new, every hand in the room was raised!

Thanks to Luis and Shannon, executive directors of their chapters, and coordinators of the event, for inviting us, and to Baxter Healthcare Corporation for their sponsorship.

Visit our website (“Events”) to see where we take Pulse on the Road next!

Visit our website to download your complimentary copy of Pulse, our newsletter devoted to insurance reform for the bleeding disorder community.

Interesting Book I Just Read
Altitude Illness: Prevention & Treatment
Stephen-Bezruchka, MD
This is a small book, written to be taken while trekking on mid- to high-altitude mountains. I read most of it on one plane ride. It’s chock full of good information, and goes into great (and scary) detail of what can happen to you if you are not careful on the mountains. It’s very dry, terse, to the point, and may make you think twice about attempting the big ones. Too late for me! I am going to tackle Mt. Kilimanjaro in August. The strange thing about altitude sickness is you just never know who it will strike. Marathoners and top athletes, like Martina Navratilova, can get it, and 12 year olds with limited climbing experience may avoid it. You never know till you are there. Two stars.

Kentucky Reigns

Laurie Kelley April 11, 2011

This week I travel to Kentucky to meet with many old friends and to be introduced to new ones at Hemophilia Federation of America’s annual Symposium. I usually am traveling overseas and have missed the last few years. HFA’s Symposium brings community members together to attend educational sessions, meet new members of the community, experience HFA programming, get motivated to action and to also have fun.

I am especially interested in the program on Healthcare Reform, to hear how healthcare reform may impact those with bleeding disorders.

So when was the last time you checked out the Hemophilia Federation of America’s website?

It’s a great place to see advocacy in action. If there is one word I’d use to describe HFA, it’s advocacy. Founded in 1994, HFA has come a long way to define itself as a national organization. It was founded to meet unmet needs, though at the time we already had a national organization. The US is a big country, and diverse, with a traumatic history regarding hemophilia. HFA began as a grassroots upstart, defying the status quo and challenging the system—it’s primary focus was on blood safety, which made sense since so many of those who founded HFA were affected by the HIV contamination.

Now, with much of that behind the community, HFA still keeps its activist core and encourages families to join their efforts. This is much needed now as we enjoy the benefits of the new healthcare reform even while we worry what it holds in store for us.

Tune in next Sunday when I will provide some highlights and photos from my visit.

And visit www.hemophilifed.org to see what this driven and talented group is accomplishing!

Great Book I Just Read
The Good Earth by Pearl S. Buck

This is one of my all-time favorites and I read it again just to keep it fresh. A timeless tale of poverty, starvation, survival and then success, and how the wheel of life keeps turning. Set in 19th century China, Wang Lung, a poor farmer, awakes on his wedding day. His wife, O-lan, a former slave in the house of a great lord, is homely and silent, but makes an excellent wife. The couple work the land and their efforts are rewarded. Until the drought… with great simplicity but beauty Buck pulls back the veil on peasant life in China, the beliefs and customs, while addressing human frailties that transcend all cultures and countries. Four stars.

COTT: Working to keep us safe

Laurie Kelley February 9, 2009

I just received another issue of the COTT Washington Update, Vol. 11 No. 1. It’s one of the most intelligent reads you can get in the hemophilia community. COTT is the Committee of Ten Thousand, a national nonprofit that was formed in response to the HIV infections of the 80s. It helped to bring closure and settlement to the community affected by HIV. But its work wasn’t done then; it has since become our nation’s watchdog for the blood supply.

Below is just a quick sample of what’s in the Update. Note the scope of topics, the relevance to hemophilia, the timeliness of it:

1. …the unexpected withdrawal of Tom Daschle, the White House candidate for Secretary of Health and Human Services, [was a setback to health reform] who was to have also directed the Office on Health Care Reform in the White House.

2. The current economic stimulus bill drafted by the House Democratic majority includes an $80 billion for Medicaid, the same for education, and smaller amounts for unemployment insurance, COBRA costs, law enforcement, military construction and homeland security.

3. A disturbing part of the Stimulus bill language was proposed, in a section supporting outcomes- or evidence-based medical research, being called ‘comparative effectiveness’ when applied to pharmaceuticals, biologics, and medical devices. The language allowed government bodies such as the National Institutes of Health to convene expert panels to review results of such studies, and in effect endorse the winners – only those most effective – with dire ramifications for others. The problem is that cost is factored into such rankings, and while as we know new products from fractionators increase safety, they may not currently reflect improvements in cost-effectiveness. Moreover, should a panel select one brand of factor over others, there is no built-in assurance as yet that the need for all factor products to be available to all patients would be guaranteed. Alerted to this by the fractionators’ association, PPTA, COTT and others wrote to relevant committee chairs in the Senate to soften this language.

4. Vermont: The Health Department office operating the Medicaid program in Vermont contracted for hemophilia pharmacy effective November 1. Although the regional and national associations were not aware of this plan until less than a week before, HTCs in the state were contacted in advance. The regional association convened a number of input conference calls, and COTT as well as others urged that the MASAC-approved Standards of Service document be shared with that office, and that Vermont be asked to respond whether its terms were met in the contract.

5. New York: The state Medicaid office has announced contracts for hemophilia pharmacy – multiple contracts, so concern about the sole sourcing actions in other states is not present, however the process exempts 340b HTCs (Hemophilia Treatment Centers which sell factor). Thus, those currently using one of the state’s centers can continue there; those in more rural areas must however subscribe to one or the other of the state’s new contractors, regardless of whatever more hemophilia-focused pharmacies they have been using.

6. The Advisory Committee on Blood Safety and Availability met in December. The only topic of discussion was “The Responsibility of Blood and Plasma Centers to Donor and Public Health.” In COTT testimony we pointed out that conspicuously omitted from these concerns was recipient health… perhaps because the blood banking community has no direct contact with recipients but can track and work to improve care provided to, and health of, their donors.

7. Wellpoint has continued to expand the number of states in which its for-profit subsidiary payers (Blue Cross) require clients with hemophilia to use either an HTC or its own mail-order pharmacy in Indiana; the total now stands at 10 of their 14 states.

This is just a sample of the breathtaking information and vast scope of COTT’s activities. The volunteers and committee members work hard to stay on top of anything related to blood safety. While many in the community use recombinant products and think this doesn’t apply to them, COTT also monitors all activities regarding hemophilia business, such as the narrowing of choice, forced homecare switching, and research.

This summer marks COTT’s 20th year. It’s planning the construction of an AIDS/Hemophilia memorial, and the celebration of COTT’s 20th Anniversary this summer with an event in Washington.

COTT writes: “Out of the ashes of the devastation of 10,000 lives emerged a grassroots advocacy group that has brought the hemophilia community a federal advisory committee now in its 12th year, a $600 million relief bill, and plans for a national blood policy, maximizing blood safety well into the 21st century.”

Please subscribe to this important newsletter, for your child’s future and current health safety.

www.cott1.org